The Resource Repository is a digital commons for the global health community. This electronic collection of documents, links, audio, and video files, relies on contributions from the community in topic areas such as newborn screening, family health history, genetic testing, reimbursement, research, drug development, community engagement, and organizational development. Check back frequently to see how the Resource Repository grows and make a contribution!
Top Downloads
Understanding Genetics: A New York, Mid-Atlantic Guide for Patients and Health ProfessionalsGenetic Alliance +1
Recent Additions
How Do I Get It? How Do I Give It? What Is it? The Genetics and Inheritance of Fabry DiseaseGenetic Alliance Webinars
Meg Hefner +3
The manual is an
"interactive" publication.
Version 2.1 consists of over
200 pages, printed and
punched to fit a 3-ring
binder (you supply the binder
and dividers for the
sections). There are sections
directed to the professionals
and others to the parents.
Includes a Medical Visit Pad.
(Available in Spanish.)
What do you get in the
manual?
* History of the CHARGE
Syndrome Foundation
* Stories from 10
families, newborn to adult
* Medical information
(over 100 pages, originally
version 1.0)
o Revised
diagnostic criteria
o Prenatal
ultrasound information
o Sections for your
doctors (to photocopy and
take to them)
o Sections for
parents (so you understand
what's going on)
* Developmental and
Educational information (100
new pages in version 2.0)
* Glossary (17 pages of
defined medical terms)
* Resources
o Deafblind
o Educational
o Medical
and more!
"interactive" publication.
Version 2.1 consists of over
200 pages, printed and
punched to fit a 3-ring
binder (you supply the binder
and dividers for the
sections). There are sections
directed to the professionals
and others to the parents.
Includes a Medical Visit Pad.
(Available in Spanish.)
What do you get in the
manual?
* History of the CHARGE
Syndrome Foundation
* Stories from 10
families, newborn to adult
* Medical information
(over 100 pages, originally
version 1.0)
o Revised
diagnostic criteria
o Prenatal
ultrasound information
o Sections for your
doctors (to photocopy and
take to them)
o Sections for
parents (so you understand
what's going on)
* Developmental and
Educational information (100
new pages in version 2.0)
* Glossary (17 pages of
defined medical terms)
* Resources
o Deafblind
o Educational
o Medical
and more!
